Research: Have you experienced a drug holiday?

[Daragh]

Help us change how doctors and neurologists prepare patients for drug withdrawal...

The European Alliance for RLS (EARLS) wants to hear about your experiences in withdrawing from RLS medication. We feel this is an overlooked area and patients are often not informed or equipped to deal with the side effects of withdrawal.

Cees Jongenelen shared his experience with us and you can read his story here.

earls.eu/blog/2021/5/25/a-d...

[Joolsg]

It's the medical profession that needs to be educated on RLS meds and safe withdrawal regimes. We've had patients on here on high doses of dopamine agonists and their GPs have advised them It's safe to stop cold turkey.So many of us have had terrible, traumatic withdrawals from DAs and our GPs have been appalling, offering no help and suggesting our withdrawal symptoms are psychological.

[Daragh in reply to Joolsg]

Hi Joolsg

We need evidence! We need people to tell us their withdrawal stories, which we can bring to some of the most respected RLS neurologists from across Europe, the actual team who define, for example, the medically-respected diagnosis criteria for RLS.

So anyone reading this, please tell us your withdrawal story, here or you can email me [e-mail] - we need people to give us the evidence!

Thank you

[Joolsg in reply to Daragh]

Happy to email my withdrawal story. Just a few hours spent on here and neurologists could see the scale of suffering. Sometimes I have to take days/weeks break as the horror stories are just too upsetting.

[Joolsg]

I've just read Cee's story and left a comment on the EARLS forum. Very depressing as clearly Cees has suffered augmentation on Sifrol and Rotigitone and is being advised to come off them and take a holiday and restart.I don't think that works. As Cees says, the time between drug holidays is getting shorter and shorter.

I think he'd be better getting off all DAs completely and stay on the Oxycontin and gabapentin or pregabalin.

So many of us have been through hellish withdrawals like Cees but I will never touch another DA again. Life off them is so much better.

Hopefully, he'll find medications that help.

[LotteM]

I second Joolsg's remarks. What a dreadful story. I am appalled that Dutch neurologist make him go through this three! times and apparently without any pharmacological help (read: opioids or not even a benzodiazepine). Cees must be extremely strong, physically and especially mentally. I'll post a comment too and direct him to this forum to get gom acquainted with alternatives. And backed-up by science alternatives, that is.

I am shocked. Not in the least because I am Dutch like Cees, and had hope that this could not happen in The Netherlands. Manerva would/will suggest that Cees should file a claim for neglect against his medical doctor. I usually take the stance that most doctors do their utmost, and fortunately I have been referred to a neurologist/sleep specialist who is willing to listen and willing to take non-standard measures. I hope we can get Cees to realise there is more hope than yet another end to yet another of his very difficult drug holidays.

[involuntarydancer]

Hi Daragh,

Could you let us know how you want to hear from us? Do you want accounts to be posted on here or emailed direct? Like many on here, I withdrew from a Dopamine Agonist without adequate support. It was described as a 'drug holiday' by my sleep consultant at the time. It seems inappropriate to use a word with such positive connotations as 'holiday' in connection with such a horrendous experience. I would be happy to share my story but it would take a few paragraphs to set out the full details.

[Kaarina Administrator in reply to involuntarydancer]

Hi there, Daragh mentioned earlier in his thread that anyone reading this, to please tell your withdrawal story, here or you can email him at [e-mail] - we need people to give us the evidence!

Hope that helps.

[Kaarina Administrator]

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